Social determinants of health and long‐term conditions in people of Black African and Black Caribbean ethnicity living with HIV in London: A qualitative study

Abstract Background People living with human immunodeficiency virus (HIV) are disproportionately impacted by socioeconomic deprivation and are at increased risk of developing other long‐term conditions (LTCs). These illnesses require transformative action to tackle the adverse effects on their health. Data on lived experiences of LTCs among people living with HIV of Black African and Black Caribbean ethnicities are sparse, and how people with LTCs are impacted by social determinants of health (SDoH). Methods Through a phenomenological study design this qualitative study, conducted in 2022, comprised four focus group discussions (FGDs) with 20 people of Black ethnicities living with HIV were purposively invited from a community organisation (CO) in London, including four semistructured interviews with CO staff. Following transcription, qualitative data were analysed thematically and measures to validate the findings were implemented. Results The findings are presented in terms of the following four levels of SDoH: (1) individual determinants (such as the impact of SDoH on lifestyle modification and self‐management); (2) interpersonal determinants (such as positive experiences of accessing healthcare for LTCs); (3) clinical determinants (such as care pathway barriers) and (4) systemic determinants (such as systemic barriers related to race/ethnicity). Conclusions It is necessary to provide ongoing and interactive education to community members who live with HIV, focusing on risks and management of LTCs. Additionally, individuals would benefit from support to navigate increasingly complex and fragmented health services. Health Service staff require cultural competence when caring for patients of Black African and Black Caribbean ethnicities with complex health and psychosocial needs. Patient or Public Contribution The research team collaborated with an HIV CO in South London from the very start of the project to agree the study design and learn about the realities of their daily lived experiences. Community collaborators helped to develop the semistructured interview and FGD topic guides, and were directly involved in the data gathering, analysis and validation.


| INTRODUCTION
The widespread availability of effective antiretroviral therapy (ART) has transformed human immunodeficiency virus (HIV) from a condition which was almost universally fatal, to a long-term condition (LTC) with almost normal life expectancy. 1 However, this shift towards HIV as an LTC has meant that people living with HIV increasingly experience age-related conditions and multimorbidity.Multimorbidity (defined as the presence of two or more LTCs) has been identified as a key challenge for people with HIV, along with lower quality of life, and HIV-related stigma. 2 The importance of social determinants of health (SDoH) is that addressing these determinants is of fundamental importance for improving health and reducing longstanding inequities in health, which requires action by all sectors and civil society. 3The World Health Organisation (WHO) has defined the SDoH as the nonmedical factors that influence health outcomes.According to the WHO, SDoHs are 'the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life.These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems.The SDoH have an important influence on health inequities-the unfair and avoidable differences in health status seen within and between countries' (https://www.who.int/health-topics/social-determinants-ofhealth#tab=tab_1).SDoH can, for example, include the following types of determinants: income and social protection; education; unemployment and job insecurity, working life conditions; food insecurity; housing, basic amenities and the environment; early childhood development; social inclusion and nondiscrimination; structural conflict and access to affordable health services of decent quality.It follows that SDoH can be identified at the individual, interpersonal, clinical and structural levels.
They have a significant impact on an individual's quality of life and access to healthcare.Race and ethnicity are also strongly associated with health and wellbeing, mediated predominantly by SDoH, including structural racism.[6] HIV is associated with adverse SDoH.In 2022, nearly 1000,000 people accessed HIV care in the United Kingdom, 7 of whom 30% were of Black African, and 3% of Black Caribbean ethnicity.A recent meta-analysis of studies investigating material deprivation and HIV outcomes in high-income settings found an association between various SDoH and retention in HIV care, adherence to ART, and viral suppression. 8Furthermore, racially minoritised people living with HIV are more likely than those of White ethnicity to be diagnosed late, to disengage from care, and to experience viral rebound. 4ltimorbidity has been shown to be associated with income, race and education amongst people living with HIV. 8,9This is of particular importance given the high levels of socioeconomic deprivation amongst people living with HIV.In the United Kingdom, it is estimated that one-third of individuals living with HIV lack the resources to consistently meet their basic needs, with a notable overrepresentation of people from racially minoritised communities.

| Semistructured interviews
FGDs were supplemented with SSIs with staff and trustees at the collaborating CO.Potential SSI participants were identified by the study team and CO and contacted by DO.SSIs were all conducted online by V. K., a white male researcher who had no previous contact with participants.SSIs lasted between 40 and 60 min and covered perspectives on the impact of LTCs on their service users, and potential strategies to address LTCs in this population.(see Appendix A) Interviewees provided sociodemographic information.

| Data analysis
FGD and SSI audio recordings were transcribed verbatim by a professional transcription agency, and content double checked for accuracy.A phenomenological approach for the qualitative data analysis was undertaken, 14,15 a method that is fundamentally concerned with people's perceptions and subjective experiences of their reality, in a particular context and at a particular time. 14o authors (V.K. and B. B.) carried out a reflexive, inductive thematic analysis 16 using NVivo 12, 17 each coding all transcripts.
Reflexive thematic analysis is a flexible and iterative approach to qualitative data that allows researchers to explore and understand underlying themes, with specific attention to researcher subjectivity.A third qualitative external researcher (J.L.) analysed two randomly selected interviews and one focus group, leading to further refinement of themes.
FGD and SSI data were triangulated to assess convergence and deviation of findings between CO members and stakeholders. 18Data were presented to CO members and staff for respondent validation. 19

| Patient and public involvement
The study team collaborated with a partner CO which was set up in 1996 and is based in South London, an ethnically diverse area where 25% of the local population are of Black African or Black Caribbean ethnicities.
The community-led charity focuses on supporting and empowering diaspora communities to achieve better health and wellbeing.It has a comprehensive programme of services aimed at preventing HIV and supporting people living with HIV in Black communities in London.Two members of the CO were part of the study team, contributing to study design, data collection and analysis and its members and staff informed the development of the topic guides.

| Reflexivity statement
The study team comprised qualitative and mixed-methods researchers from multiple ethnic backgrounds (Black African, White European and East Asian).They were aged between 30 and 65 years old; three were cisgender female and two cisgender male.Most had academic and/or clinical experiences of working in the field of HIV in London.

| RESULTS
Data from FGDs and SSIs are presented together, with pseudonymised accounts to illustrate identified themes.As an indication of how many participants contributed to each theme, 'majority' corresponds with more than 15, 'most' for more than half and 'some' indicates fewer than half.
Four FGDs were conducted with a total of 20 participants (n = 3-9) in each FGD (see Table 1 for participants' sociodemographic characteristics).Four stakeholders (one cisgender male and three cisgender females have worked at the CO between 4 and 10 years).
Two were unable to take part due to other commitments.
The qualitative data gathered during focus groups, complemented by the interviews is presented in relation to individual, interpersonal, clinical, and systemic determinant levels described above, and this framework is used to organise Table 2. Once, referred to specialists, some described limited understanding of medical terminology, coupled with lack of confidence in asking questions to healthcare providers:

| Individual level determinants
Even if you got it [understood the doctor's explanation], perhaps you've got a limited understanding, using jargon, you cannot sort of marry common man's language that [is] used with the medical language.
[FGD4 Male] For others, the ability to advocate for oneself was constrained by culturally bound views of doctors: The problem we have as Africans, [is] we're not persistent.Whatever the doctor will tell you we find it very … we're a bit shy to like talk back to the doctor Care-seeking for LTCs was further compromised by HIV-related stigma. 20Most FGD participants reported self-stigma following their HIV diagnosis, and the impact this had on their willingness to tell others in their community about their HIV status.Some FGD participants reported HIV clinic appointment consultations as problematic, not only because of disruptions to HIV care but also the impact on screening and monitoring of other LTCs (which are routinely undertaken within HIV clinics).
My smear test has been cancelled now; I think this is the fourth time, and I was due to be done in

March. [FGD3 Female]
For many, the switch to remote appointments meant the loss of continuity with staff they had built relationships with over years and difficulties establishing rapport over the phone: Even … with my bloods, like last year, with the HIV bloods for the past two years, every time they [HIV clinic staff] give an appointment, they cancelled it.
They said they didn't have any bottles to take bloods, it was kind of frustrating.FGD and SSI participants reported that LTCs in addition to HIV were common in people living with HIV of Black ethnicities.Their accounts reveal how SDoH, including race and immigration status, result in poor mental health and constrain people's ability to adapt their lifestyles to prevent poor health outcomes.The intrinsic link between race, physical health and mental health is captured by the concept of 'weathering'.'Weathering' accelerates ageing due to early health deterioration as a result of material hardship and racism in marginalised populations. 21Our data show how weathering may be embodied by people of Black ethnicities living with HIV in London, for example through accumulated levels of physiological stress when dealing with racism and material deprivation.
Our data reveal that despite the burden of LTCs in this population, there remains limited awareness of the risk and potential preventative strategies.FGD and SSI participants highlight how a variety of SDoH (including economic hardship, low educational status, insecure immigration status, racially minoritised status, cultural difference, and crucially HIV-related stigma) are perceived to increase not only the risk of LTCs (often as a result of impact on lifestyle), but also LTC outcomes, self-management and engagement with healthcare.As a result, the CO became a trusted, valued and safe space within which people could receive stigma-free, culturally appropriate support.
General Practitioners and specialist HIV services are aware of the complex intersection between health, social and economic marginalisation.Many HIV services screen for social vulnerability, as recommended by national HIV monitoring guidelines. 22However, lack of resources in an increasing cash constrained health service often prevents healthcare staff from providing holistic and adequate ongoing support. 23What is notably absent in these data are accounts of shared and coordinated care across primary and secondary care, which improve management of LTCs.
FGD participants reported that they felt under-confident in navigating the healthcare system and in challenging stigma and discrimination by healthcare providers, leaving them feeling frustrated and uncared for.In addition, advice from healthcare providers were sometimes difficult to implement as a result of different cultural Stigma is a globally recognised barrier to health seeking behaviour, engagement in care and adherence to treatment 25,26 across a range of LTCs, 27 including HIV infection, 28 diabetes, 29 epilepsy. 30Stigma continues to have a devastating impact on people living with HIV, which one stakeholder described as 'killing more people than HIV itself'.The study data reveal how felt and enacted stigma and discrimination (as a result of HIV and/or race) impact consultations and function as barriers to care seeking and engagement in care for LTCs.
Based on findings from this study, we have adapted the multilevel intervention matrix (see Figure 1) outlined by the recent Lancet series on race and health, 24 to offer potential targets for interventions to improve LTC care amongst people living with HIV.

| STRENGTHS AND LIMITATIONS OF THE STUDY
A strength of this study is the inclusion of people living with HIV as participants as well as a CO with many years of experience supporting people living with HIV from Black communities in London.
The degree of overlap between these accounts from members and stakeholders was particularly revealing and provides further confidence in the validity of the findings.Moreover, the involvement of CO members and staff in the study design, data gathering, analysis and interpretation increased the relevance and rigour of the study.
FGDs and SSIs were conducted with one CO, due to time, resource and funding constraints, and COVID-19 restrictions.It is important to note that none of the FGD participants worked fulltime, most were of East or Southern African heritage, and no one was younger than 35 years old.Therefore, the findings cannot be generalised to younger people.As this study was conducted in London the findings may not be applicable to other settings.

| CONCLUSIONS AND RECOMMENDATIONS
This study will allow healthcare providers, commissioners, and policy makers to better understand the complexities of living with HIV and preventing or managing other LTCs, when also being of racially with HIV to achieve optimal health and wellbeing.

2. 1 |
FGDsMembers of the collaborating CO were approached in person or by phone by co-author (D.O.) and invited to participate in FGDs.Individuals were eligible if they were living with HIV, of self-reported Black ethnicity, and aged 35-65 years.People were eligible regardless of gender and/or whether they were living with LTCs apart from HIV. FGDs were conducted either online (n = 1) using Microsoft Teams, or in person on the CO premises (n = 3) and co-led by V. K. and a CO staff member (R. M.), a Black African woman with well-established relationships with members.FGDs were audio-recorded with consent, and contemporaneous notes taken by facilitators, lasting between 90 and 120 min.They were mixed gender groups, with same-gender breakout discussions covering potentially sensitive topics such as reproductive and urological health, and menopause.All participants received £20 in recognition of their time and expertise.The FGD topic guide was informed by existing literature[11][12][13] and the experiential knowledge of the research team, in close collaboration with CO members.The FGD topic guide was further refined through discussion with CO staff and members.The FGD covered experiences of LTCs, the potential impact of SDoH on LTCs, knowledge and perceptions of LTCs, care seeking, attitudes towards prevention interventions, treatment, and self-management (see Appendix A).Participants also provided sociodemographic information.

[
and] say 'no doctor, can you do this [test for example]?'No, [we] just take whatever the doctor said.[FGD1 Female] Whereas for some, lower educational status impacted confidence in navigating clinical consultation, ultimately affecting management of LTCs:… for some people the level of education may be very low…they've never integrated fully into the [NHS] system here … advocating for themselves becomes an issue, so how they then manage these long-term conditions is greatly affected.[SSIparticipant 1]

…
I was hiding my medication because I have to receive people in my house, then when they walked away, I couldn't [find my HIV medication] … yeah, because it's not all the family who knows.Now even it [HIV medication] gives me another stress … you think people are looking [at you] … you are not the same [person].[FGD1 Female] The fear of stigma and discrimination as a result of their HIV status also affected their willingness to engage with health services: It's [stigma] actually bigger than living with HIV … we [the CO] are trying … with this campaign [to] say 'stigma is killing more people than HIV itself' because it stops people from engaging [with NHS services] … it's a huge, it's a huge, huge issue.[SSI participant 1] 3.3.2| Practitioner related barriers Some FGD participants perceived a lack of attention from healthcare providers during routine non-HIV consultations (i.e. for other LTCs): … they [medical staff] give them [patients] … might be 5 minutes [or] 10 minutes, [but] they don't let you really explain everything [medical situation].[FGD1 Female] … [the] General Practitioner and [the] doctor [non-HIV specialist in secondary care] … are not kind of looking at the person … when they [patients] are coming to say that 'I have this problem', they [medical staff] are not kind of really take it seriously to monitor what is going on… [FGD1, Female] Some reported instances of HIV-related stigma from NHS staff and discrimination within healthcare settings.…NHS staff as well, so because I do outreach, I was at an outreach session, and I was talking some stuff about HIV.This nurse said, she goes, 'people [who] have got it [HIV] through blood it's not their fault, but everyone else it's their own fault', and I just looked at her and I was like, oh, this is NHS staff.[FGD3 Female] We face challenges every day-in day-out.It doesn't stop … there was a woman in our support group … in hospital, the support staff doesn't even come [close] to her because [of her HIV diagnosis] … you can see that kind of stigma.[FGD4 Male] Stigma within healthcare services had a particularly negative impact on people's readiness to engage with healthcare services, with potentially detrimental effects on the management of LTCs, which often require long-term monitoring and treatment: But mainly also stigma comes from professionals as well … the professionals not understanding the person's background or perception on things, so it's the way a professional can approach a person in asking what is affecting them can either put off the person or encourage them to come back.[SSI participant 3] 3.3.3| COVID-19 pandemic-related clinical barriers This study was conducted in Summer 2022, when NHS services had undergone significant disruption as a result of the COVID-19 pandemic.Many HIV and non-HIV related services had been reconfigured, with nonessential appointments deprioritised and most services provided remotely.In 2022, many NHS services remained affected by the pandemic.

3. 4 |
Systemic level determinants 3.4.1 | Systemic barriers related to race/ethnicity A few FGD participants expressed mistrust of biomedicine as a result of historical medical racism, which made them reluctant to seek medical care: A couple more [of] these other factors which I believe could strongly have affected my personal uptake or the care I receive.Historically we, coming from Africa … I think there have been experiments done in the way towards Black people.You hear about the cases of syphilis and so forth … [it's a] very hard call for someone to come up front and be willing to start a medication of what they are not sure of putting in their bodies.So historical experiences are one of the factors … how do you expect me as an African in this country to buy into the idea that really what they are doing with my body could be for my good?[FGD4 Male] This situation was further exacerbated by experiences of culturally or racially based stigma and discrimination within healthcare settings: … when they [CO members] access generic [non-HIVrelated] services they feel they are judged [by NHS staff], just because of the misunderstandings of their beliefs [e.g., prescribed treatment] and their norms and so on … really, we don't have services that are particularly tailored to particular groups of people, e.g., Africans.[SSI participant 3] 4 | DISCUSSION To the best of our knowledge, this is the first qualitative study in the UK that explores LTCs in people of Black ethnicities in the United Kingdom, and the role of SDoH on risk, outcomes, and management (including self-management) of LTCs.
minoritised status.Multilevel interventions are required if care is to be improved for those living with HIV and other LTCs, including to address the negative impacts of SDoH.However, this is challenging in the context of reductions in social care and health budgets, an increasingly hostile environment for migrants and reduced funding for vital COs (leading to widespread closures of local charities that provide essential services to the most marginalised groups in society).This study has highlighted the need to co-produce tailored and accessible educational interventions for LTCs for and with people of Black African and Black Caribbean ethnicities living with HIV in the United Kingdom.Initial findings from this study have been presented to the collaborating CO and will inform future development of resources for staff and service users.This includes specific support in shared decision-making and challenging healthcare providers.It is vital that COs receive funding so they can continue to provide services and support that empower racially minoritised people living This study seeks to address this research gap by exploring qualitatively the lived experiences of LTCs amongst people living with HIV of Black African and Black Caribbean ethnicities, and how they are impacted by SDoH.Specific objectives were to explore, amongst people of Black ethnicities living with HIV: (i) awareness of LTCs; (ii) impact of SDoH on the development and self-management of LTCs; 9he potential to elucidate the complex interplay by which SDoH lead to poor health outcomes, as well as providing insight into the challenges and solutions within communities.This qualitative study was nested within a larger quantitative study investigating SDoH and co-and multimorbidity in people of Black ethnicities living with HIV in London.9 Sociodemographic characteristics of focus group attendees.Overview of the overarching themes and subthemes identified from the focus groups and interviews.For some, there were financial barriers to exercise, for instance being able to attend a gym, and a perception that advice did not consider these barriers:… what the doctors actually suggest will be so hard for us to start with, you know, even starting these exercises … it will be so difficult … we end up not 3.1.1| Awareness of LTCs CO stakeholder participants highlighted the burden of LTCs amongst members living with HIV: A gentleman, our service user … has got diabetes, high blood pressure, kidney disease, [high] cholesterol … and is going for a [kidney] transplant and for dialysis three times a week.[SSI participant 4] However, a majority of FGD participants reported limited awareness of the risk of developing LTCs, especially in the context of HIV: Some diseases, they just came like a surprise, because we never knew about them [LTCs] and get sick … I would say it's kind of like a lack of information, we were not aware about it.[FGD3 Female] I think … the HIV might have a direct relationship with some of the conditions I have as the direct cause … I'm not too sure.Say for example I didn't mention the T A B L E 1 a Missing data, participants did not complete all the sociodemographic information.thinning of the bones, osteoporosis.My understanding is perhaps some of the antivirals are directly linked to that and … problems with sleepless … the neuropathy perhaps … the HIV diagnosis itself or maybe the medication would impact on somebody's mental well-being… [FGD4 Male] CO stakeholder participants described how HIV is often the focus of attention for people living with HIV, and that proactive provision of information may improve awareness and prevention in these communities: From the African context, once they [clinicians] are going to say [they are] HIV positive, your mind is consumed by that [the diagnosis].You're no longer inquisitive of other [long-term] conditions until it is too late, but if they [patients from African communities] had prior knowledge, perhaps they would have been equipped to know better how to look after themselves and prevent … experiences of the long-term conditions.[SSI participant 2] 3.1.2| Impact of SDoH on mental and physical health Many FGD participants highlighted the impact of socioeconomic factors on both their mental and physical health: diagnosed with that you know what you are prone to diabetes, and also these aches and pains and, you know, looking after somebody [husband with HIV] … is really, you know, making me very, very, very, very stressed.[FGD1 Female] And then because you don't have enough money to buy better food and drinks, which is low salts, then you are constantly consuming these high sugary drinks because they are cheap, because I don't have enough money to buy good ones, then diabetes comes along the line, I was pre-diabetic myself and I found it was that [cheap drinks] [laughs].[FGD2 Male] I can categorically say there is a correlation between having no money and then gaining more weight, because when you have no money you go for the cheapest things that you can find … like there are some areas where they [residents] are so kind of influenced like, the way that people live there, they live longer and people in areas where there's deprivation, where there's poverty, and it can actually just be two bus stops away …. so yeah, definitely for me I can say that, and for us who come here [CO] I can relate to degree I went to the Bar, but even then, I don't get jobs, [so] I started drinking and start[ed] getting depressed.[FGD2 Male] Many participants had migrated from African countries, with experiences of the UK immigration system, specifically delays in T A B L E 2 … first of all, … [if] a person is not stable mentally and does not have a place, a permanent place, you know, to live in [accommodation], then [this] not only affect their [underlying HIV] condition but affects their whole life really, their whole health, their entire health is affected and that makes their long-term health conditions worse.[SSI particiof food … they … take in [eat] … create this condition of obesity and it creates often high blood pressure … and all those conditions are also creating all of [the LTCs] they want to [avoid].[SSI participant 2] … another [factor] that contribute[s] a lot [to developing LTCs] is the way we Africans cook.Most of us, we actually use a lot of oil in our food … yeah.So, this is another major factor that affect[s] our life … especially the cholesterol, high blood pressure and also this diabetes and obesity and everything.Even some cancers.[FGD1 Female] These accounts highlight that addressing lifestyle factors to prevent or attenuate LTCs in these communities is not simply a matter of providing information and education.Many people were aware of the importance of diet and exercise, however social and cultural factors made it hard to adhere to medical advice.CO stakeholder spoke of the importance of healthcare providers understanding these barriers, and situating advice within these communities' social and cultural contexts: … from a clinical point of view, you tell them [members] 'do this, do this, do this', but from a practical point of view that's not translated [into their cultural context] … if they have grown up eating what we see.But when you go for a training, the trainer will tell you 'this is the amount of food, like five of fruit'.Until when I went to a training … that is why they [session lead] gave me [explained] the nature of the food I'm supposed to be eating.If I'm the one who's suffering from it [pain], so if you talk about the care, yeah, it is there, but it's getting so complicated nowadays.It [NHS] was better off when I remember when we first started [came to this country].If you complained to a GP, consultant, your GUM consultant, and say, 'You know what, I'm having practices, health beliefs and/or socioeconomic deprivation.A recent